Friday, July 17, 2009
Tuesday, July 14, 2009
Teamwork
When friend Jeff and I were autocrossing regularly, we got pretty good at planning our approach to a course before we each made our first run. We'd watch other drivers, occasionally time them, note where they placed each wheel, watch which turns they struggled with and how they improved on subsequent passes. Between our runs we'd compare notes on weight transfer, braking points, exit speeds, and adhesion limits ("it's either sticking or it's going in the trees!"). Our pre-run planning and mid-race adjustments often paid off, for not only did we improve our times on every run, we'd both finish at or near the top of our classes. Working together made both of us better drivers.
As Ann Marie and I seek a path forward with my heart condition, we're seeing my doctors rely on the wisdom and expertise of their peers in much the same way. While we found more questions then answers in my appointment today, we're comforted knowing some very smart people are on the job.
Now to the details. We want to share the pertinent info so everyone has it, but know we run the risk of glazing your eyes over (as ours sometimes do). Sure, we might lean on you for wisdom or support, but we promise we won't quiz you on specifics as long as you do the same for us :-)
That said, this morning's CT scan shows the narrowing is in the pulmonary artery, at the point where the donated tissue meets mine. The valve itself is doing fine, which is great. If the doctors and we conclude a surgical replacement of the affected area is our best option, there's a fair chance this longer-lasting valve can be spared. Regardless, the man-made material used in a new artery would set me up for a simpler surgery if and when the valve needs to be replaced.
But surgery isn't necessarily the only option. A possible alternative still being discussed is the balloon and stint procedure I mentioned in a previous post. To succeed, it would need to widen the artery without causing the pulmonary valve to leak, or at least leak significantly. A valve that leaked too much would again lead to surgery, perhaps on the same day. A delicate decision, considering the degree of narrowing.
To reinforce the team, our surgeon has recommended two respected Ross procedure experts be consulted. One doctor is from St. Louis and the other Philadelphia, the latter primarily a pediatric surgeon where the Ross procedure is a necessity since the living tissue grows with the child. We're all for more expertise.
What these doctors will also consider, assuming I have surgery, is our surgeon's suggestion for a related preventative procedure. The car analogy, if crude, comes to my mind: "if you're going to replace the timing chain you might was well replace the water pump". In my case, it's a portion of the aortic artery which has widened since surgery. It isn't causing any problems, but could in the future. Like the problem with the pulmonary artery, the widening of the aortic artery is something that happens to many Ross procedure patients. For me, it just happened a lot sooner than most.
We'll sort all this out over the coming weeks. We appreciate your thoughts, prayers, and help. In the meantime, I think it's time for some more autocrossing :-)
As Ann Marie and I seek a path forward with my heart condition, we're seeing my doctors rely on the wisdom and expertise of their peers in much the same way. While we found more questions then answers in my appointment today, we're comforted knowing some very smart people are on the job.
Now to the details. We want to share the pertinent info so everyone has it, but know we run the risk of glazing your eyes over (as ours sometimes do). Sure, we might lean on you for wisdom or support, but we promise we won't quiz you on specifics as long as you do the same for us :-)
That said, this morning's CT scan shows the narrowing is in the pulmonary artery, at the point where the donated tissue meets mine. The valve itself is doing fine, which is great. If the doctors and we conclude a surgical replacement of the affected area is our best option, there's a fair chance this longer-lasting valve can be spared. Regardless, the man-made material used in a new artery would set me up for a simpler surgery if and when the valve needs to be replaced.
But surgery isn't necessarily the only option. A possible alternative still being discussed is the balloon and stint procedure I mentioned in a previous post. To succeed, it would need to widen the artery without causing the pulmonary valve to leak, or at least leak significantly. A valve that leaked too much would again lead to surgery, perhaps on the same day. A delicate decision, considering the degree of narrowing.
To reinforce the team, our surgeon has recommended two respected Ross procedure experts be consulted. One doctor is from St. Louis and the other Philadelphia, the latter primarily a pediatric surgeon where the Ross procedure is a necessity since the living tissue grows with the child. We're all for more expertise.
What these doctors will also consider, assuming I have surgery, is our surgeon's suggestion for a related preventative procedure. The car analogy, if crude, comes to my mind: "if you're going to replace the timing chain you might was well replace the water pump". In my case, it's a portion of the aortic artery which has widened since surgery. It isn't causing any problems, but could in the future. Like the problem with the pulmonary artery, the widening of the aortic artery is something that happens to many Ross procedure patients. For me, it just happened a lot sooner than most.
We'll sort all this out over the coming weeks. We appreciate your thoughts, prayers, and help. In the meantime, I think it's time for some more autocrossing :-)
Monday, July 13, 2009
While you wait
If your doctor's appointment gets rescheduled after you've been in the waiting room for 45 minutes, it sure helps living in the same state. Patients come to Johns Hopkins from all corners of the planet, and unlike them I'm able to be back to work in the afternoon. I've got a CT scan tomorrow morning and will see my surgeon around lunchtime.
So, while you're waiting for news, consider reading my micro blog (Twitter). You'll even find a list of the license plates we saw in the hospital parking garage. Just visit krahe.org and click on 'Chris'.
So, while you're waiting for news, consider reading my micro blog (Twitter). You'll even find a list of the license plates we saw in the hospital parking garage. Just visit krahe.org and click on 'Chris'.
Friday, July 10, 2009
Percentages
I was talking to my brother this morning and he asked some questions that I hadn't blogged about, so I thought I'd drop in a quick post to summarize some things.
- How I'm feeling doing normal things: about 90%
- My athletic capacity compared to 2 years ago: maybe 5%
- The size of my pulmonary valve/artery now compared to after surgery: roughly 20%
- The percentage of my surgeon's Ross procedure patients that have rejected the donated valve in less than 5 years: less than 1% (uh, that's just me)
- How motivated I am to getting better: 100% !
Fixable
At a conference I attended a few years back, the creator of Fixables.net introduced his site. The concept was simple: people post problems in their neighborhood, like potholes, graffiti, overgrown trees blocking sidewalks, etc. The community helps find who's responsible and works together to get the problem fixed. While this idea hasn't taken off at Fixables.net, it certainly has at other sites. Something fixable, a strong community, problem solved.
That my current heart issue is fixable is a very good thing. Sure, we don't know exactly how yet, and yes, it might mean another surgery not unlike the one back in September. The hangup is that recent tests haven't been able to identify the area of restricted blood flow as either the pulmonary valve or pulmonary artery. Knowing this would give my doctors a better sense of the likelihood of success of a balloon and stint procedure -- a technique that expands the area and keeps it there. If that worked, it would the easiest recovery for me -- about the same as recovering from a day of moving the unsightly pile of topsoil from my driveway to the backyard (we really have to finish that :)
In the meantime, I'm surrounded by a great community of family and friends. We really enjoyed our staycation without having decisions to make about next steps. That Ann Marie and the kids had great ideas and equal motivation for fun sure helped. It's also been wonderful talking to friends who followed my blog last year and who've been reading it since. As much as I'd like to, I don't always have time to catch up with everyone, and when I do I'd much rather talk about the fun stuff they're up to. After all, who starts a community barbeque conversation with "hey, how about them potholes down the street"?
Should be fun weekend with Alli's birthday party and (hopefully) more of this stellar weather we've been having. We'll see my surgeon on Monday and hope to have a plan soon after. Thanks again for following along.
That my current heart issue is fixable is a very good thing. Sure, we don't know exactly how yet, and yes, it might mean another surgery not unlike the one back in September. The hangup is that recent tests haven't been able to identify the area of restricted blood flow as either the pulmonary valve or pulmonary artery. Knowing this would give my doctors a better sense of the likelihood of success of a balloon and stint procedure -- a technique that expands the area and keeps it there. If that worked, it would the easiest recovery for me -- about the same as recovering from a day of moving the unsightly pile of topsoil from my driveway to the backyard (we really have to finish that :)
In the meantime, I'm surrounded by a great community of family and friends. We really enjoyed our staycation without having decisions to make about next steps. That Ann Marie and the kids had great ideas and equal motivation for fun sure helped. It's also been wonderful talking to friends who followed my blog last year and who've been reading it since. As much as I'd like to, I don't always have time to catch up with everyone, and when I do I'd much rather talk about the fun stuff they're up to. After all, who starts a community barbeque conversation with "hey, how about them potholes down the street"?
Should be fun weekend with Alli's birthday party and (hopefully) more of this stellar weather we've been having. We'll see my surgeon on Monday and hope to have a plan soon after. Thanks again for following along.
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